Gratitude, Grief, and Moving On

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A butterfly on the door

I learned about a hospice tradition with my aunt. They put a dragonfly or butterfly on the door of a patient who is actively dying. It signifies the fleetingness of life.

Grama has a butterfly on the door.

Barb was with me to sign Grama into hospice this summer. It was strange, of course. Who was gonna go first – mother or daughter? My aunt half joked about how it would be nice to have a “cute little double funeral.” Yeah. Real cute.

Well as we know now, that didn’t happen. And now it’s Grama’s turn.

I have so many emotions I don’t know where to start. Grief on top of compounded grief, anger, confusion, panic, anxiety. Grama has been falling into dementia more significantly over the past year and as of a few weeks ago, she didn’t know me. She was pleasant and adorable as ever, but I could be anybody. That stings.

Last week they gave her a prognosis of 1-2 days and we’re past that now. She’s quiet now, relaxed, not responding much, but still hanging around. These strong, stubborn women in my family hang on, no matter how adamantly they will death to come.

Initially I intended to sit vigil. I’m glad for the time I did, it resulted in me advocating for better med management for her, merciful rest through her pain and anxiety. Conversations with hospice staff helped me to realize I didn’t have to be so militant, so compulsive with my care for her. Guilt was running me. Guilt for my absence over the past year as I finished school. Guilt for putting her in the nursing home in the first place.

Hospice staff pointed out something wonderful and true: today I can be a loving presence in the room even if she doesn’t necessarily know who I am. But as for who we have been to each other all our lives, I’ve already done everything I can do for her.

After they said that, I went home for a nap. I was woken by a call from the hospice chaplain. I spilled my guts about all the conflicting feelings and my spiritual doubts, my quintessential question about who I’m doing this for. She said a lot of comforting things but what stuck was her saying to me, “you’re her person, it’s natural that you feel all these things.” She encouraged me to say everything I’ve wanted to say because it might just be good for me. So I have. I didn’t realize how many feelings I have tucked away about how I’ve been losing her over the past months. Losing communication with this smart, funny, loving woman has been such a terrible, progressive blow. I’ve packed that away and it’s slipping out now.

So having said it all, I wait. Again. And even though I know I don’t have to be there, even though I don’t know whether “spiritual ears” can hear through deafness and dementia… I compulsively go over there a couple times a day. To sit. To keep watch. To tell her how much I have, do, and always will love her.

I’m so grateful that you found me, which prompted me to come and visit your blog and I could begin to read your story, so lovingly written. The photograph is so beautiful and says so much. I also read your post of what you said at your Grama’s funeral. Thank you for writing. You have given me a glimpse of what my parents may have meant to my children, as I was not close to my own grandparents. Warm hugs to you.